Category: waiting

Difficult to talk to…

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That was the assessment of my sister-in-law, some time in 2004. She told me I was difficult to talk to, and I had no idea how to speak to children. There was a longer story than that, obviously, but her words were in my head today. It’s funny how certain things can stick around for decades. I’m not sure we’ve had a conversation of any length since then.

But, in fairness I don’t speak to too many people. Not because I don’t want to. In fact most of the time I would love to share a (caffeinated) beverage with any number of people. But, I don’t talk too much anymore.

I’ve kind of run out of things to say.

Pop music? Sports? Movies? Actors/ Actresses? Fashion? Influencers? I’ve got nothing. All out. I have NO IDEA.

Politics? I’ve got things that most people don’t want to hear. So that’s out too because I lack the energy to debate morality. And, well, as a chronically ill woman, who has held down a career, and not stunk at it for 29 years, and the mom of a chronically ill woman, who is well on her way to a career in healthcare, I lack the patience or desire to hold my tongue on certain things.

I’ve noticed there are people in life primed for a crisis. They love to help and jump all in until something is fixed. Those are amazing people. We knew a lot of them. We sometimes ARE them. They come in full force in a difficult situation, and then they wait for the issue to resolve so they can move on. They are wired for acute situations. Chronic medical drama requires a set of wiring most people don’t have.

What happens when the crisis rolls into another? What of the tests that have more tests to follow, and scanxiety that leads to procedures and surgeries where we then wait for biopsy results? What happens when multiple body systems get involved at the same time and prevention and survival crash into each other?

Unfixable situations make people uncomfortable. They want to lob well meaning suggestions about “not worrying so much,” or “is all that really necessary?” They want to pretend it’s not happening. They avoid basic questions because the answers make them uncomfortable. They avoid learning more about our rare disease because it is pretty intense.

My 50s have brought me to a place where I have tired of making reality softer to make other people feel better.

We’re not head in the sand people. We are face it head on, be healthy and strong for as long as God fills our lungs with air and of people. And that has meant some chronic string of medical insanity.

PTEN can’t be fixed. It’s a broken gene. It permeates every cell in the body. It is with us forever, with all of its tests, and scans, and tumors, and surgeries, and all the subsequent PTSD from too many hospital stays; and too many incompetent, insensitive, and often uneducated medical professionals.

They decorate the hospitals. For the seasons. I guess it makes sense. But, it always seems kind of odd while we’re there. The decorations help mark time on the calendar and keep us aware of what’s happening in the rest of the world.

I will stand by the fact that I wish they would provide my greatest need – caffeine in a bottle for the coffee averse among us. I cannot commit to a can. If you’ve been in a recovery room, you felt that on some level. I just want a bottle that I can close back up and return to as needed while pretending I care about my Facebook feed or the random game of solitaire I play.

We tend to mark time in pre surgical selfies and waiting room photos. To each their own I guess.

On December 16th we were in a “pre-surgical” room where I recognized the photo on the wall from a stay in 2017. It was 3 penguins. I distinctly remember because it reminded me of our family. That’s a whole new level of weird. And it’s not exactly table conversation.

Every time I think we will get a breath, it gets more intense not less. and I retreat. Into a shell. In my house. Where the act of going outside and pretending I understand a culture that I have not been part of for well over 2 decades is simply too much.

I got invited to dinner yesterday. It was a sincere invitation to a celebration. I couldn’t get out of my own way. The anxiety swallowed me whole.

I promise I’m not wickedly self-absorbed. I actually am a pretty good listener. I am decent at looking involved at tables where I have nothing to contribute.

I’ve become more empathetic as I age.

I know people around me suffer challenges and crises all the time. I sometimes feel guilty taking my own time to deal with the things heavy on my heart. My Grandma was quick to remind me “it could be worse.” She wasn’t wrong.

But, just because it could be worse, doesn’t mean that something doesn’t suck. And just because it sucks doesn’t mean that you get to lie around and freak out. Or hide in your bed and whine for too long.

Because we only get one go round on this earth. And the only way out – is through.

Wishing you health in 2026. Because little matters more.

We remain…

#beatingcowdens

“It Doesn’t Suck”

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“Thank you…” That’s how she led at 6:30 on a Saturday morning, when I picked her up 140 miles from home so she could squeeze in a uterine biopsy on the weekend, so as not to miss any class her first week of PA School.

“Thank you…” How many 21 year olds lead with that? Nothing to eat or drink. Half asleep. Headed to ANOTHER procedure which would require ANOTHER IV into a vein literally EXHAUSTED from overuse.

She spent a few minutes telling me about her Friday night out with her new classmates before falling asleep. “It doesn’t suck.” This was absolute music to my ears.

Anyone who doesn’t know Meghan, and hasn’t followed her story, and even some who think they know her, but haven’t really been paying attention, might think that describing her first week of classes as a graduate student by saying “It doesn’t suck,” is negative, pessimistic, or a bad attitude. But to me, who has been paying the closest attention, knowing the reality that virtually every school experience has “sucked,” this was music to my ears.

No point in going backwards to the countless times when she was belittled, ostracized, tormented, and tortured. She was never perfect, and she never claimed to be. But years of therapy have taught her not to shrink herself down to fit into anyone else’s box. I don’t know why many kids found her unlikeable. But she knew it. Always. And the ones who didn’t mind her were typically too afraid to speak up. “It doesn’t suck…” cautious optimism. I’ll take it!

I had 5 hours in the roundtrip between home and her school to reflect on this kid. And I have to tell you, I’m so proud of her sometimes I feel like I could burst.

Don’t get me wrong. The years of social isolation have been daunting and exhausting. But, they have given her wisdom and patience well beyond her years. She has gained confidence. She is insightful. She is capable of telling you her weaknesses right alongside her strengths. She is transparent, and straightforward. You never doubt where you stand. She is passionate, loyal and driven. She is resilient.

Writing has been hard for me these last few years. I feel like we mark time in between surgeries, rehab, appointments, tests, and more surgery. I have withdrawn from almost every relationship I have because most people seem exhausted by our chronic cycle and I have grown weary of apologizing for our reality.

Meghan’s tumor in her right thigh took up most of her high school and college years. ’19, ’22, ’23, and with the ultimate torture in the summer of ’24, she became a regular at PT during the years when kids her age were debating which party was better. A mere six months after the worst surgery by far, our New Year’s Eve was spent at NYU in recovery from her bilateral mastectomy. Which, in case you wanted a reference, she said was so much easier than the leg surgery. Well, pain wise anyway… but, I digress.

We are living inside of 2 PTEN mutated bodies with all the trials and tribulations that come with them. My own scans continue. Battles with insurance and radiology alike are the rule, not the exception. In the last 6 months two of our primary providers left their practices and the job of “training” a new doctor begins again.

Pride. Focus. Determination. Dedication.

Meghan and Ella graduated from Misericordia in May. Then, the difficult decision was made that retirement was in Ella’s best interest. Selflessly she put her best friend and closest companion ahead of herself. Again.

Ella is slowly transitioning to retired life with her “brothers.”

She left in early June, a year after that leg surgery that still has me traumatized. She walked away from me with her passport in hand, and traveled 2,500 miles to meet the one friend she will keep forever from her undergrad. They met in Vancouver and they had a 2 week adventure that included activities she had never even dreamed of being able to accomplish. She paid her own way with gifts carefully saved through her entire life. She is a traveler in her soul. This was the first of many journeys that passport will see.

We squeezed in a ton of appointments at the end of June, including beginning to “train” our new endocrinologist. One of the appointments was a pelvic ultrasound. She has had them frequently since her “endometrial hyperplasia” in 2015. And when the report popped into her chart that Friday afternoon – we knew it was going to need follow up.

Her gynecologist is just an utterly superb woman, who trusted me with her cell phone number at our first visit. I texted her and alerted her. She found the report, and we were scheduled to see her July 3rd. Classes started July 7th. Because.. why not?

Her biopsy was Saturday. I stayed with her until the IV was placed and we met up again in recovery. It is a dance so familiar to us that in and of itself it’s unsettling.

We don’t have results yet. But I am tired of waiting. I’m tired of waiting for the next thing to be finished before continuing our story.

This is an ongoing saga. PTEN mutations do not get “fixed.” We may find some lulls along the way, but waiting is so much a part of this life.

Meghan took this at a butterfly exhibit in NYC with her dad, on her grandfather’s camera. I thought the busted wing on this blue beauty was epic.

Meghan walked out of the procedure, stopped, looked me in the eye, and thanked me. Again. I told her to stop, and she said no. “I’m so happy I didn’t miss Friday night, because of that uncomfortable Saturday.”

Maybe that’s the lesson. Don’t miss Friday because Saturday holds a daunting reality.

Two 300 mile round trips in 18 hours. She didn’t skip a beat and was right on time for classes today where she belongs.

Here’s to hoping “It doesn’t suck” continues to transition…

#beatingcowdens

Today Was a Difficult Day

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There is no longer a need for pain meds. At least not the ones that heal your physical pain.

The pathology, all nine pages of it, has been sent to several places for “additional review” due to the rare and unusual (who is surprised?) although thankfully benign tumors throughout both breasts. No, they were not “just fibroadenomas.” No, they would not have “resolved themselves.” No, they were not “just hormonal fluctuations.” What they were, were warning signs, and a confirmation that the right thing was done.

“Your story has a double mastectomy in it.” That is what she had been told. The only variable was where it fit in the plot line.

Deciding when to have a double mastectomy is not an easy decision. As a 21 year old it is another epic step in a way too difficult journey. But, it is one that no one, not Meghan or her medical team regrets.

Today was the second post operative visit. The drains were removed Friday. The incisions are healing. But, today was a difficult day.

Today was the day where my beautiful girl, so beaten down and traumatized by the cruelty of humans was left vulnerable and once again in a waiting pattern.

Wait, it’ll get better. Every. Single. Time. They kept saying it her whole life.

You’ll feel better. You’ll meet new people. People will step up. The pain will lessen. It’ll get easier.

Except it didn’t.

Not the pain in the leg, or the diffuse pain of being bullied, abandoned or silenced for being “too much.”

Today she went in with scars fresh from the cancer prevention amputation that was her New Year’s Eve date. Today she went in bruised and scarred and trying to find her footing in this new body.

Today she was greeted with kindness. She was treated with respect. But, she was given words that hurt.

You. Have. To. Wait.

She knows patience. Trust me. She has waited in offices. She has waited for pain to subside. She has waited, better and more gracefully than most.

But, my girl is a do-er. She wants to do it, and put it behind her.

No one spoke about this waiting place.

This place where you just wait for scars to fade, and swelling to subside. Where you wait until you don’t feel like you are looking at a stranger in the mirror. This place where you wait to feel comfortable in your own skin, in any clothes, or just at all. This waiting place where mental torture reminds you of years of trauma and of never feeling quite enough. This place where you crave talking, but so many run because the sound of your voice is too much for THEM.

This place is not where she will stay forever. But, it’s like her car is out of gas, and the nearest station is too far away. She must pause and wait on the healing and try not to lose herself in the relentless noise in her head.

I’ll put her fall Dean’s List certificate in her scrap book while she works on her final undergrad semester remotely after this exhausting day.

The next post-op is in three weeks.

Today was a difficult day indeed.

Cowdens is hard work. It is not for the faint of heart. If you love someone with this wicked syndrome or any like it, be present. It is everything.

#beatingcowdens

The Glider- from Birth to Bilateral Mastectomies

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The glider I added to my baby registry in 2003 was arguably the piece I cared the most about. I am not big on stuff, and am unimpressed by “fancy.” I am all about practical functionality.

That glider housed my wide bottom as I awaited the birth of our precious child as she took her sweet time to arrive 10 days late. It held our girl Meghan in the arms of countless relatives and friends who stopped by in the earliest days of her life.

I held her in that glider in the summer of 2003 when the east coast blackout left my sweaty postpartum body begging for some type of a breeze, as at just a few days old, clear signs of colic were showing.

That glider held us for story time and bottles.

The glider held the two of us for the better part of most nights, when despite being told I was spoiling her, every instinct in my body told me not to leave my baby. No matter how bone crushingly tired I got. I knew not to leave her when she was in pain.

And when I was so very tired that I was afraid I’d drop her I would strap her into the Baby Bjorn just in case, and tell her stories from memory, like “My Most Thankful Thing…”

There came a point where we couldn’t fit in the glider together, but even as I knew we’d never have another child and I donated most things, I never parted with the glider.

She snuck in there with me in 2011 when we were processing the news of our Cowden’s Syndrome diagnosis. She sat next to me in 2012 while I used that glider to recover from my “prophylactic” bilateral mastectomy that gave me a “surprise” diagnosis of stage 1 DCIS.

The glider stayed in her first bedroom when the middle school years moved her upstairs and I claimed her old bedroom as an office.

After our then puppy Jax decided the paint on the wall was irrelevant and he used the glider as a battering ram, we repainted and moved it upstairs to her new room.

Every once in a while she would read in it and let her fantasy books take her away from middle school days that were too cruel for words.

She recovered from Covid in that glider.

That one piece of furniture has so many stories to tell.

But this story, the one where I sit across from my 21 year old baby sleeping in the glider, this is one I wish it didn’t have to tell. Or maybe I’m grateful it can be told this way. It is certainly one of the times perspective is critical.

I have so many emotions right now, less than 24 hours after my baby had a bilateral mastectomy and is recovering in the very same glider that has been a huge part of our lives.

She walked into NYU at 1:30 on 12/31 armed with the knowledge that it was her choice to take some level of control of a life that is so often in a free fall. Breast screenings began soon after she turned 21 and a BIRADS 3 screen in August was followed by an MRI that just could not tell her all was ok.

“Probably benign” is not an acceptable finding if you’ve ever met Meghan, especially when it showed 7 distinct and some sizable masses. Already.

We met a plastic surgeon in October who immediately put her at ease. He walked in having read her history and said, “What can I do to help?”

The most current, albeit small, longitudinal study of 700 patients puts PTEN Breast Cancer risk at 91%.

Meghan pays attention. Her maternal grandmother who does NOT have a PTEN mutation had bilateral breast cancer at 48. Her PTEN mutated mom had hers at 38 with a history of 8-10 surgical biopsies spanning the 14 years prior.

A mastectomy was always part of her story. None of us realized it would be this soon.

Cowden Syndrome gives you the tools to screen for our many cancer risks. It also empowers you to not ignore them when those screenings fire a “warning shot.”

The plastic surgeon said pathology will tell the final story but her breast tissue, like so many other parts of her, was older than her 21 years.

Over these last few weeks as we have slowly shared the news of this upcoming surgery, without fail the people who Meghan admires and respects are the ones who have come forward to tell her how brave and smart she is. They tell her how wise it is to control this one thing, in a life that has been too full of unfortunate surprises.

Those who have judgment, or seek only to gossip should keep moving. The older we get the easier it is to sort out who we need by our sides.

I stare at my baby, all grown up in our glider, and I vacillate between sadness and immense gratitude. I despise the ferocity with which this syndrome has made every single thing harder. Yet, my heart bursts with pride as she just continues to overcome things most others cannot comprehend.

This is not her hardest surgery. That hell on earth took place in June, but this one also deserves some time to rest.

Rest my girl. You’ll start that last semester of college a little late, but you’ll be ready. Misericordia Class of 2025 and Misericordia Class of 2027- Master of Physician Assistant Studies. The medical field needs you – and plenty more others like you.

I hope when you sleep you feel my love, and the love of all who ever held you in that glider wrapped gently around you.

I am so proud to be your mom, and we are together…

#beatingcowdens

No Rest for the Weary…

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I have found when I am just exasperated by life, I get really quiet. Like hide in a corner, under a table in a dark room kind of quiet.

And if you’ve been looking for me, that’s where I’ve been since mid-August.

Mid- August, about 30 seconds after Meghan’s leg started to feel like it was ok to keep it attached to her body without the need to writhe in agony, is when we went for another one of her PTEN “routine” scans. Except nothing is routine when you have Cowden Syndrome.

So a few hours later when the report posted, we took a gut punch. There were definitely things to be concerned about.

And, when her gynecologist called the next day after reviewing the results it got a little harder to breathe. She said, even though the report suggested a 6 month follow-up, she wanted us to go in 3. And book her with a surgeon for a consult soon.

So we scheduled the follow up sonogram for the day before Thanksgiving. And we scheduled the surgeon(s) for her fall break – Thursday and Friday of this week. We will head into the city on the bus together. Not to see a show, or do some shopping, but rather to get her established at the Perlmutter Cancer Center, and learn our next steps.

Meghan and I have talked at length about the likely next steps. We just need the doctors to weigh in. We are not “getting ahead of ourselves” as some like to suggest. We have read more than our fair shares of scans and reports. We know when something is going south.

And so Meghan headed to her senior year of college in August with the crippling pain of her leg slowly receding, and the epic weight of this new news weighing her down like a stone hung around her neck.

Literally it felt like 30 seconds in between.

My beautiful girl continues to make life happen, she and Ella in their own, well-deserved apartment this year. But it is so hard to be free. It is so difficult to be present with peers who even if well-intentioned could not possibly relate.

My girl continues to interview for Physician Assistant programs and to proceed as if success is inevitable. Even though sleep eludes her. Even though her entire life seems to be in a state of flux.

I think about the people who tell us, alone or together that we should “reach out” when we are overwhelmed. And I wish with every fiber of my soul that instead those people, who are rightfully at a loss for words, would send a simple text to her. One that says you’re not as alone as you feel. One that says, it’s ok to talk to me. I will be here. And even if you can’t talk, even if you can’t form the words, I will keep checking on you. Because even though we are painfully aware everyone has something, sometimes the load is just too epic to carry alone.

When you have a chronic, cancer causing condition, there is always an appointment and a scan. But the longest time, the one that is the hardest and the loneliest, is the wait between scan and plan.

Those are the times where you just cannot focus on anything. That is when you are the most vulnerable and alone.

We’re not high maintenance people. But there is literally no rest for the weary.

We will be headed into the first of those 2 appointments midday on Thursday as we have done all the others – side by side.

Because when we are lonely, lost and overwhelmed we remember that we have each other, and a dad/husband who loves us both with his whole soul.

As we push through these next days we remain quietly…

#beatingcowdens

What if it all works out?

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What if?

That is hands down my least favorite question. It is one that puts my head in places I’d rather it not go. I believe very much that a positive mindset can have a positive impact on your mental and physical health. Do not ever confuse that with the Toxic Positivity that I ABHOR. They are not one in the same. That being said, my trips to dark mental places typically begin with “What if…?”

So of late, I’ve presented myself with the challenge of “What if it all works out?”

October 2021

When I last wrote Meghan was in the recovery phase of a layered procedure to address a precariously placed vascular malformation in her upper thigh. And, while she is not pain-free, the crippling nerve pain that had started to occupy every hour of every day has faded to black. This pain is different. And maybe for those who have not lived her life, it would be too much. But anything is better than that nerve pain. Anything. She will have an MRI/MRA to check the status of the surgical site in August.

She has been fully weaned off the Lyrica, a drug that was doing its job on the pain but doing an ugly number on her physical and mental well-being. Her thyroid meds have been raised. The muscle relaxant is much lower. And she is starting to have some mental clarity back. She has begun walking, a few miles at a time to get her physical strength back and to give some muscle back to the leg that was just too painful to do much with.

She set a goal. She wants to run a 5K. To some that may not seem like a big deal, but this girl was told at the age of 8 that she could not run. At all. She had to quit soccer. She had to drop dance. She could not join track even though she longed to run. She landed in the pool because it was all she had left. For her, it is an epic goal. This week she got the blessing of her orthopedist to go for it. Slowly. She is hoping to be ready this fall.

What if it all works out?

Don’t worry. We are not delusional. We know the long and windy road will continue before us forever. We know that we often have to pause at the rest stations along the way. We even know that sometimes we have to pause at DIFFERENT rest stations, because she is not me, and I am not her, and we each handle the struggles that come at us differently.

We have not forgotten about this, which we will carry forever.

But, what if it all works out?

I am overwhelmed by appointments on the regular. I am sometimes downright angry that so much of our life is punctuated by traffic and travel. Not to beaches or parties, but to doctors and hospitals. I am sometimes totally twisted that there seems to be no time to breathe and that “regular people” appointments, job issues, car trouble, and nonsense seem to come at us like sideways hail in a storm where the umbrella is inside out and useless. I hide from those I love, unable to repeat the same story over and over like an old and worn record.

But I listen. And I hear. I remember. I know of sick parents and terminal illnesses. I know of cancer battles, aging struggles, and injuries. I pray for families whose children are frighteningly ill. And my heart aches for friends who have buried their children.

What if it all works out?

There is a chance. There is always a chance. That we will screen and scan and bob and weave the worst of what Cowden Syndrome has to offer. My girl, despite her obstacles, has an impressive GPA, a relationship where they treat each other with incredible respect, a career path on the horizon, and life goals to make this world a better place.

What if it all works out?

This week we had appointments two days in a row. 35 miles, roughly 2-2.5 hours each way to Long Island. One was to her favorite orthopedist who never leads us wrong. He wants hand therapy for the healing fractured scaphoid (just “regular stuff” finding its way…) if we can manage it. And, he wants to see her again before school starts in August.

The next day we went to see a Pediatric Rehabilitation and Medicine doctor. We met him as part of the “new team” in December and he was brought on to address issues of pain. In December we could not change anything about the pain management as the goal had to be to survive until the procedure in May.

However, we were both intrigued enough to want to hear what he had to say when things settled a bit. Literally the only opening the entire summer was a 2:30 on 7/7. We arrived after a ridiculous drive and he did not disappoint. In this day and age, a doctor who is covered by insurance and takes an hour or more with you while LISTENING is unheard of.

More miraculous for us, is when issues of chronic pain and a generally overloaded sensory system were brought up, they were met with concrete medical validation, complete with images of the brains of patients with similar struggles. He met Meghan where she was and had a thorough discussion with her, appreciating that she had enough knowledge after a grueling year in Anatomy and Physiology to talk to her on her level.

What if it all works out?

It’s tough to be a teenager. It is exponentially tougher to be a teen whose life is filled with so much pain and medical drama. It is the worst to be a teen when you have lived through and endured more than most adults, and those same adults discount your reality, your pain, and your experiences. It is rare and refreshing when a doctor does not. Apparently, there are a few on Long Island that are worth the Belt Parkway.

He was able to validate what she knew. That she can FEEL everything in her body with abnormal acuity. But he didn’t throw a drug at her, he took notes and kept her talking. Then, when he had a suggestion for a medication to trade out, not add on, and potentially eliminate two and add one, he still wasn’t done. I’m not sure which one of us brought up her purple feet as she had been sitting in sandals for almost an hour on an exam table, but that sparked another conversation. I listened as he asked questions on a list I had been checking off for years. I smiled behind my mask, not because I was glad about what he was going to say, but because it made sense and he was LISTENING.

This is the same doctor who questioned her diagnosis of Hypermobile Ehlers Danlos because it did not feel quite right to him. After a lengthy conversation including all the right questions, and some heart rate checks he said “POTS.”

Postural Orthostatic Tachycardia Syndrome, brought so much clarity for her. Especially in the middle of a week-long hardcore battle with her stomach.

And finally, there was potentially explained everything from her heat intolerance to the painfully twitchy foot that sometimes drives her mad, and everything in between.

What if it all works out?

Why am I not flipped out by this? Because nothing changed. All the symptoms she was having in the office on Thursday have been with her in varying degrees for her whole life. And, truth be told, many I recognized in myself. All that happens with a diagnosis, a label, if you take it for what it is, is that you are validated. Finally. And in this life, it matters. And maybe from this, and switching a few medications around and changing a few things, she will be able to go even further, and do EVEN MORE.

Doctors who work with you, teach you to maximize what your body CAN do. And since Cowden Syndrome is not a disease for the faint of heart, we need all the strength we can get to keep moving forward. Our doctors are mostly a “guide on the side.” They are there to provide scans, medication, and sometimes procedures. But, mostly they are who we need to teach us how to maximize our lives in these bodies. They are to help us never feel weak, less than, or incapable. When they do their jobs right they are to explain and empower.

Meghan has her first GI screen this week. On Tuesday there will be a colonoscopy/endoscopy baseline. It comes at a good time because that stomach has been in a FOUL mood this last week. And we are hopeful that it shows, as GiGi used to say, “A whole lot of nothing!” And then, maybe we will take a break for a week or so and put the doctors on pause.

For today, I come to you from a place of “What if it all works out?” A place of gratitude, grace, and grit.

I am a messy hair, no make-up, living on grace, making-it-up-as-I-go-along loner. I am not ignoring you. I am busy seeking joy on the Belt Parkway and the BQE, and believe me when I tell you, that is a full-time job!

#beatingcowdens

Matching shirts and car selfies. “Vacation” 2022

Forced Pause…

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My sister had a series of hamsters when we grew up.  I don’t remember how many.  I actually don’t remember much besides the smell of the cage, and the wheel they used to run in.  They never seemed to tire of it, and each spent long periods of their day there.  Maybe it’s because they were caged with few other options.  Maybe they didn’t know any better.

Regardless, I’ve thought about those hamsters a lot lately.

I feel very much like we live on the wheel.  Every day is centered around executing a well-oiled machine where an insane amount of activities, assignments, and appointments fit into a tiny window.  So at an early hour we hop into the wheel in a sense, and we run all day.

When you’re in the wheel you may think about nothing except for the next task.  Or you may wonder if there is a better way to get through the day.  You may long for a break from the routine and the schedule.  You may wonder what you’d do if…

We are chronically busy.  Sometimes out of necessity and sometimes by design.  Sometimes, in the case of those of us with chronic illness it is a little of both.

In my house we are busily maintaining health, through frequent appointments and therapies.  We are also busy trying to fit a regular life around it.  There is constant motion.

Until there isn’t.

I spent so many moments wishing I could take things a little slower.  I wished I could have some time, for a full nights sleep, to clean my house the way I want it, to visit with friends, to take long walks, and…

And now I’m here.

A January foot injury at work has morphed into a monster that refuses to heal.  Stress and strain and alternate gait patterns protecting the original injury continue to set the healing process in the wrong direction.  A stress fracture of  the cuboid bone continued to worsen.  It’s now my first official “fracture.”

It is time for me to pause.

This time there is no rushing out of the boot.  There is no making believe its all ok.  There is waiting.  Resting. Minimal weight bearing.  There will be additional imaging to clear the healing before I head to physical therapy.  There are only very short car trips to doctor’s appointments and to transport my girl.

I am here.  In my house.  Alone.

And it sounded to heavenly when I was dreaming about it in the middle of the chaos of the day to day.

Now it sounds a lot like the tick-tock of the clock hanging over my head.

It feels a lot different when I have to let someone else teach my students.

It is not as productive as I’d hoped, since all the cleaning and sorting and organizing I promised myself if I ever had time is currently off limits with the whole restricted movement thing.

It is a battle not to let my head overthrow me with its worry about “real” Cowden’s issues that may at any point smack us in the face.  It is tough not to think about the backlog of surgeries that will come, but have now been placed in triage.

And yet I have to make a choice.

There was a very inspirational GoalCast in my Facebook feed this morning.

Claire Wineland Dies at 21 and Leaves Beautiful Message

And I’d encourage you to watch it if you have a moment.

Her life was way more challenging than mine.  Yet she made a choice that I still struggle with sometimes.

These last few months without the proper use of my feet have often left me battling depression.  I do not have it all together, or have an inspirational message as this young woman left behind in her short time on earth.

What I do know is if I choose to wallow in this I will miss the “pause” that has been placed in front of me.

Instead I will make the conscious choice to make what I can do, more fulfilling.

I am going to try to write a lot more.  I am going to have some people visit.  I am going to handle a few “sitting down projects” that are in my path. I am going to open the windows and appreciate the fall weather even if I can’t walk in it this year.

I’m going to look at my orchids, and their beauty and crazy, stubborn irregularities that make them magical for me.

I am giving small pieces of my life back to reflectiveness and prayer and simple mindfulness.

Someone took the wheel out of my cage.

For however long it’s gone, it’s on me to decide how to view it.

If you take the time to watch the link above you’ll understand when I say today I am looking to add some lights and a few throw pillows.

This is not easy.  If you’re reading this you likely go through hard things too.

I am a work in progress.  Thankfully God’s not finished with me yet.

I’ll be here with my feet up.

This too will pass eventually.

#beatingcowdens

Normal People Stuff

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Two weeks of as much rest as I can possibly stand.

The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life.  You ALSO have “normal people stuff.”

After that early January fall, I was quite consumed with my shoulder, and pretty bothered by the flippant attitude of my breast surgeon.  All of which still stew inside of me as the real possibilities of breast implant associated illnesses are all over the news this week.

Just one of the many stories this week outlining a possibility. That’s where it begins. With someone saying it “could” be. 

And then there was the new endocrinologist on March 12th.  It was a backwards progression of sorts.  A referral from the surgeon who has been following me since my PTEN diagnosis.  I never really settled into a new endocrinologist after I disagreed with my long standing one in 1998.  He was bothered by my questions.  I bounced in and out of a few.  I found them mostly arrogant and out of touch.  I held with one during my pregnancy in 2003, but ditched him soon after my C-section.  I had a primary running bloodwork, and I was guiding treatment based on my labs until the Cowden’s Syndrome surfaced.

At that point I was handed off to an endocrine surgeon.  The possibility that the half of my thyroid which remained after a partial thryoidectomy in 1993 could fall into the 35% lifetime risk of thyroid cancer that comes along with a PTEN mutation was real.  We agreed on annual follow-ups using the ultrasound in her office.  All was smooth until February 26th, when she saw some calcifications on the ultrasound.  She got spooked and wanted a “fresh pair of eyes.”  She referred me to an endocrinologist in her hospital.

He sent me for a “proper” ultrasound before my appointment.  He then, with some promising knowledge of what a “Cowden’s” thyroid looks like, went through the images from the exam.  He told me that there were some potentially concerning features, but nothing that appeared urgent.  He questioned why I had not been using the formal ultrasound at the hospital, as there was now no baseline to compare it to.  In another episode of wondering why I don’t ask enough questions about my own care, I had to let it pass…

He told me the radiologist would read the ultrasound with more concern than he did.  He was right.  So there will be another ultrasound in August.  We’ll talk about the status of that right thyroid lobe then.  In the mean time he offered me a change of medication that in 30 years on Synthroid no doctor has ever entertained.  Monday I will begin a lower dose of Synthroid combined with a twice a day dose of T3, liothyronine, in hopes that I might get some of my sought after energy back.  With a standing order every 3 weeks to monitor blood levels, at this point, I have nothing to lose.

So back in circle to the “normal people stuff” intertwined in this balancing act.   April 18th is still the earliest day to contend with the chronic ear pain and fluid I’ve been handling since September.  It doesn’t matter that it has headed into my mouth and is bothering my teeth.  That it is somehow messing with the nerves so badly that I ended up with a root canal specialist yesterday.  Of course, she won’t touch the painful tooth because no one can know exactly what is in my ear.  Pain management.  Maybe it’s Cowden’s.  Maybe it’s allergies.  Maybe it’s simple.  Maybe it isn’t.

And then there is that foot. Snagged on a kids chair in a third grade classroom in the middle of teaching a lesson.  It knocked me on the floor.  I was so worried about the shoulder, and the breast implant that I ignored the foot.  At least I tried to.

About 2 weeks after the fall I saw my primary and asked for help.  She suggested an MRI.  GHI promptly denied the MRI and told me to ice and elevate as much as I could, and reevaluate in 6 weeks.  I was left with no choice but to continue a job that kept me more hours on my feet than off.  By March 6th I couldn’t take the pain anymore and headed to a podiatrist.  He evaluated the foot, ordered Xrays, and got them read within hours.  By the next day he had the MRI approved and I went in for the exam.  About 72 hours later I got a call asking me to come in to discuss the results.

That’s never an actual good sign.

So when I walked into the office in two sneakers, I kind of suspected that I wasn’t going to leave in both of them.  And I was right.

MRI revealed a partial tear of the lisfranc ligament in the left foot.  Apparently this is an incredibly rare injury, (insert shock and surprise here) that the podiatrist anticipated before the MRI.  Apparently you can only get this injury through a twist and fall, you know, like catching it on a student’s chair mid-step.

I got a soft cast, and a giant walking book.  I got pulled out of work for at least two weeks, with no idea when the good people who review these cases will approve this as the clear work-related injury it is.

I have another appointment with the podiatrist tomorrow.

There is State testing at work this week. I’m always there for testing.

But right now I’m actually testing my inner strength.  Resting my foot.

I’m preparing for my clearance to return to work.  I’m preparing for my ENT appointment.  I am preparing to get my ear fixed.  I am preparing to get ready to lose the other half of my thryoid.  I am preparing for another plastics consult…

And all the preparing in the world won’t matter.  Because life will come in the order it wants.  That is the lesson for Cowden’s Syndrome and real life…

The dog hair and I will be here until then….

#beatingcowdens

 

It’s This Day to Day Living…

Published on by beatingcowdens3 Comments


And that might be an accurate description of my current assessment of living with Cowden’s Syndrome.

It’s so hard to put into words.  Those who don’t understand are likely to think I’m insane.

When you know your mission, you carry it out.  You are driven.  Focused.  There is something that needs to be accomplished, or an adversary beaten.  You have a crystal clear goal.

As difficult as those moments have been, I am starting to find the ‘forever’ aspect of this syndrome to be overbearing at times.

Some days it seems no matter which hurdle we clear, something else is in the line of fire.

I waffle between doctors who are either not interested, or are so overworked that they lack the time, energy, or desire to research and think from the alternate view required for a 1 in 200,000 mutation on the PTEN (tumor suppressor) gene.

Research.  Real research  (yes, I am smart on the internet and know what to read and what to brush off,) is surfacing so often that it is hard for me to even keep up.  I don’t expect my doctors to be on top of it.

I expect them to treat me as a partner in my own care.

They have gone to medical school.  I have not.  However I have more extensively studied Cowden’s Syndrome than they ever will.  And I still have a great deal to learn.

Gone are the days when “doctor knows best,” and I should comply without question or explanation.  This is my life. This is my daughter’s life.  And wherever I can assist, I intend for those lives to be long and strong – physically, mentally and emotionally.

Tuesday the 26th was my “doctor day.”  It became a necessity years ago that I take a personal day and “stack” my annual appointments.  This makes the day out of work worth it.  Some years things are smooth.  Other years, well… not so much.

After a fall at work in January, where my 5 foot 7 frame ever so gracefully landed on my right shoulder and implant, I have been uncomfortable.  The implant that was previously easy to ignore was prevalent in my thoughts all day.  It is not ruptured, and I was able to get MRI confirmation of that.  However it is just annoying.  It sits slightly off place, a constant reminder to my brain and body that it is THERE.  I am grateful it is not painful.  I am not content to live with this situation indefinitely.

My discomfort, and the knowledgeable people I share some Facebook support groups with, let me down a path of research on silicone implants.

I learned a whole bunch of things.  Most of those things are probably inconsequential in my life, but they made me angry.  I had double mastectomy with immediate implants in 2012.  In 2016 the implants needed to be replaced way ahead of schedule. (With a maximum of about 10 years on average).  I had one breast surgeon and two plastic surgeons.

No one spoke to me about a condition called BIA-ALCL (breast implant associated anaplastic large cell lymphoma).  The risk is minimal, but it exists.  No one ever talked to me about it and allowed me to make an informed decision.  We have a rare disorder that predisposes us to greater cancer risk.  No one has thoroughly studied the occurrence of BIA-ALCL, and certainly no one has considered it in relation to PTEN Mutations.  No one knows.  But, I deserve the uncertainty discussed.

Further down the same page is the screening recommendation that women are screened via MRI for silent rupture 3 years after the first implants, and every 2 years following.

Not a word. Ever.

https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm338144.htm

There are other pages.  Solid articles.  But if you read the above link you get the point.

So I saw my breast surgeon first.  All was good on exam.  That was a relief.  I began a discussion about the above, and was really upset by her flippant response.  I was told I was reading too much on the internet.  I was told that there was no conversation about possibly removing my implants.  Granted this is not something I was ready to do tomorrow, but it was something I wanted to learn about.  I was told I would be subjecting myself to unnecessary surgery and she would counsel my plastic surgeon against even entertaining it.

I honestly felt like I had been hit.

I asked her what her thoughts were on BIA-ALCL related to Cowden’s Syndrome.  She had no answer.  I asked her how many PTEN patients she sees. 20? No 10? No 5? No, less than 5.

I asked about screening MRIs.  I was told they were “unnecessary”.  I referred her to the above link.

I could not believe that I sat in the middle of a major cancer center in New York City.  I felt violated and angry.

Next came my oncologist.

She is a kind woman with very few answers or helpful tips on risk management.  She pretty much looked up Cowden’s and checked that I have no breasts, no uterus, and half a thyroid, so I should be easy to manage.  I asked her questions about bone density,and heart health, (30 years of thyroid replacement, 7 years into forced menopause) and she simply said, “I don’t know.”  I asked about the lymphangiomas on my spleen that currently outsize the spleen itself.  She started to talk to me about spleenic “cysts” but I drew her back to lymphangiomas and the vascular component that often affects PTEN Patients.  I have not desire to lose my spleen, nor do I have a desire to harbor a potentially destructive organ.  We settled on a bone density and an abdominal sonogram to measure the lymphangiomas.  At least this makes sense to me.

Off to the otolaryngologist with a hopefully not PTEN problem.  He did vocal cord surgery for me 2 years ago to remove some growths.  This day the vocal cords were clear.  The right ear however has been an issue since September.  I spent a bit of time treating for migraine, and blaming the chlorinated pool spectator sections.  I had 4 doctors prescribe antibiotics when they saw fluid in my ear, and another a short course of steroid.  All cautioned me about hearing loss.  I regained my sanity to some extent when a friend gave me Mucinex sinus max.  Something about it helped the pressure.  The doctor got a look in my ear and used his camera to show me the fluid inside the right ear that is not draining.  He also looked deep in the ears and told me something was “off” with the ear canal.  But that was as far as he would or could go.  He gave me the name of a doctor to treat me.  He also told me to get a hearing test, and to understand that they must find a cause prior to any treatment.  April 18th was the first I could get.  Mucinex for all till then.

The endocrine surgeon came into my world post diagnosis in early 2012.  I believe her function was to evaluate regularly the remaining 1/2 thyroid, as thyroid is one of the greatest PTEN related cancer risks.  My thyroid was partially removed in 1993 due to a diagnosis of “multi nodular goiter.”  At the time, the prevailing wisdom was to leave one of the lobes intact and suppress it with high doses of synthroid, keeping the TSH (Thyroid Stimulating Hormone) low.  For years I operated with a lower than normal TSH, but it worked for me and seemed to keep the remaining tissue quiet.

When I was diagnosed and my team changed, so did some of the management theories.  This endocrine surgeon, who was only managing my medication as a courtesy, not as a regular practice, preferred a slightly higher TSH level.  We jousted a few times about fatigue, and other side effects that come with adjustment.  We had made peace on a split dose, until I had my levels measured in January and they were WAY to high for my physical comfort zone.  After my initial glee that I was not totally losing my mind, and that I needed medication, I started to wonder why the level change.  My weight was consistent…. my activity level consistent…

She did a routine sonogram of my neck in the office.  For the first time in 7 years she paused.  “There are small calcifications.  They were not there before.”

I asked about a biopsy and she told me she would not even know what to biopsy.  She’d be “guessing” as the thyroid bed is undefined.  She said she wanted me to consult with a colleague who is an endocrinologist well versed in molecular genetics.  She told me it was no rush.  She was going to Email his staff, and I could reach out when I have a school break in April.

That was Tuesday afternoon.

Wednesday morning I received a call that it was suggested I book the first available appointment.  I did so for March 12th.

I was told to obtain an ultrasound for basis at a local facility.

Thursday morning the phone rang again directing me to get the ultrasound at the hospital before I see the doctor.

Things seem to have moved from very casual, to lets not dawdle, quite quickly.

I’m not emotionally attached to too many non-essential organs anymore.  I’m vested in getting anything out before it causes me trouble.

Life is a juggling act.

I have plans.

Doctors appointments get in the way.

I know people who use sick days to vacation.  I use mine on the Gowanus Expressway.

I want to get it together, and see people.  I want to have casual conversations and catch up on people’s lives.

I will.  One day.

But for now the energy remains focused on a kind, lovely, compassionate teen, and keeping these two “Rare” ladies in their best health.

Oh, and that fall in January left me with a pain in my right foot that just won’t quit…

Tick tock… the waiting continues…

And we remain forever

#beatingcowdens

 

 

It’s Complicated…

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I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang.  I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I acknowledged the call clearly coming from the medical office we had visited earlier that day.

It was Tuesday the 11th.  “Spring Break” had begun Saturday the 8th.  Early that Saturday morning I had left on a road trip alone to the Marine Corps Base in Quantico where I had the privilege of watching a Marine who served with my Dad receive the Bronze Star with Valor – almost 50 years after the day it was earned.  It was a whirlwind trip – 5 hours down that morning, and a busy, fun, emotional day that lasted well past midnight.  I returned to Staten Island by 12:30 PM Sunday, in time to catch Meghan’s 1 PM Swim meet.  Felix took “off” the workweek and spent Monday and Tuesday overseeing the installation of air conditioning in our house.  It was 24 hours well spent – 12 each day- but the inevitable trail of dust and dirt needed to be tended to as well.  So, I had headed to this appointment alone with Meghan earlier in the day.  Now I was trying to visit with Grandma, although she’s often unsure I was ever there… I still know.

I took a deep breath before I answered.

A lovely young woman, whose cheery voice caused me to immediately forget her name asked, “Is this Meghan’s mother?”  That is my favorite title- depending on whose asking.  I tried my best to muster and equally cheery, “Yes, it is.”

“Oh, good.  I was asked to set up Meghan’s surgical date.”

Sigh,  Even though I knew the call was coming – it doesn’t get easier.  I also knew I had very specific directions from Meghan that I was to “get it done as fast as possible.”

“How soon can we do this?”  I asked.

“My first available is May 11th.”

“REALLY?  A whole month?”  I thought of the anticipation and the anxiety that would build as the pain increased.  Then I realized something worse.  May 11th is opening night for “Bye Bye Birdie,” her school play.  Cast as Rosie she’s been preparing forever.  There was just no way.  I swallowed hard.

“What if I can’t take that date?”  I held my breath,

Cheery changed her tune.  I’m sure she thought I was being difficult.  I tried to explain.  No luck.

“The next date is May 20th, then you’re into June.”

I was playing out the June calendar in my brain.  ComicCon with Dad, school dance, graduation, West Virginia… forget about the Long Course Swim Season and the 2 meets we knew she’d have to scratch out of, and the last CYO Swim meet she’d ever be eligible for- that was out too.

There was never going to be a good time to be out of commission.

Deep breath.  “Any chance you’ll have cancellations?”

“No.”

“Ok then.  May 20th it is.”

And after telling me I’d need to give up a day the week before for formal pre-surgical testing, which is a first for us, as she grows up, I didn’t bother to explain I’d just missed 16 days of work for vocal cord surgery.  I just said, “Thank you.”

Meghan’s relationship with her right knee is complicated.  It started giving her trouble before she could talk, as her first babysitter will attest to hours rubbing that knee.  As she grew, it got worse.  It always seemed to bother her.  She pushed, and pushed.  Eventually it was hot to the touch and pulsating.  The diagnosis came in 2008, after multiple mis-diagnoses, including “her pants are too tight.”  Finally, a team at Sloan Kettering, adept at ruling out cancer, was able to diagnose a high flow arteriovenous malformation (AVM) in that knee.  We were sent off to Interventional Radiology at Lenox Hill, where the doctor confidently told us he could eliminate this AVM in “one procedure – 2 tops.”  Between December of 2009 and February of 2012 there were 4 embolizations on that knee.

The doctor seemed almost relieved when she was diagnosed with Cowden’s Syndrome in the fall of 2011.  It seemed as if he felt better about himself, like there was another explanation to justify why the darn thing just wouldn’t quit.  By that point she was being run through the surgical mill, so we welcomed the 2 and a half years of monitoring.  It seemed to stabilize.

But, as everything overlaps and one thing leads to another, there was pain.  There was pain that she was repeatedly told should not be there.  Yet, no matter what they said, the pain was there, and it was consistent, and it was real.  She pressed through.  She stopped soccer and tried dance.  The knee was cut out for neither.  She found her way into the pool in the spring of 2013.

By that fall we had signed her up for a 12 month competitive swim team, and things were looking up.  She swam a full year, getting stronger, becoming more confident, and finally feeling like an athlete.

There were other surgeries in between.  And there was that knee pain.She had been prescribed Celebrex to substitute for the Advil that was being consumed in clearly excessive quantity to allow her to function.  And the Celebrex was wonderful.  Until it wasn’t.

And in May of 2014, two months after a complete thyroidectomy (thank you Cowden’s) she lay in the hospital in severe GI distress.  It took a week to stabilize her.  I was scared.  Out went the Celebrex, fried food, and a whole host of other goodies.

But, little did I realize, that Celebrex was likely the reason the AVM had quieted down.  Apparently the drug has properties that work on blood flow.  A few months off of the Celebrex and all hell broke loose.  Literally.  It was November of 2014, the Tuesday night before Thanksgiving when she collapsed outside of swim practice, unable to walk.  Our travels that night took us directly to Lenox Hill ER because we were sure it was the AVM in action again.

Proven right when the surgeon showed up early the next morning giving me a surgical time for her, they drained 50ccs of blood from the knee that day.

Blood and bone and tissue are not friendly.  It’s like neighbors invading space.  You can tolerate it for a while, but it doesn’t take long before the damage is irreparable.  It became evident there was structural damage beginning because the blood had begun to wear things away and allow the knee cap to move to places it did not belong.

We were advised to consult with an orthopedist, and we did.  He wanted a coordinated arthroscopy where both he and the interventional radiologist would be in the OR together.  It became an orthopedic procedure.  The patella was moved back where it belonged.  Things were cleaned out.  Recovery was smooth relative to the emobolizations.  We were told it would last a few years.

In January 2017 we were pretty much released from interventional radiology.  We were told the AVM seemed quiet and we need only bring her back if she becomes symptomatic again.  In February the knee pain started again.  Slow, but steady, it kept growing in duration and consistency.  At a routine visit the orthopedist mentioned the potential need for another arthroscopy.  He reviewed the January MRI and showed us where the patella had shifted again.  He said her growth plates were “wide open” (a scary thought at over 5’7″) and that this would continue to be an issue at least until she finishes growing.  He offered her a “patella stabilizing brace” for 6 weeks, to see if it would do the job he wanted done.

Tuesday the 11th he looked at her knee for less than 2 minutes before he started making plans for the surgery.  He explained to us what he needed to cut and move, and why it was time to get it done.  We had the necessary conversations about length of time out of the pool, and other restrictions.  We left, quiet and resolved.  The only thing she asked me was to just get it done as soon as possible.

So when the phone rang in the hall last Tuesday afternoon, I felt sucker-punched, again.  Regardless of how many times I tell myself, and her, that it “could be worse” and we have to “look at the bright side,” the reality is that sometimes it sucks.  And that’s just the frank honest truth.  Scheduling your 7th knee surgery in 13.5 years is just not ok, not even a bit.  I was grateful for Grandma, and the ability to be distracted for a bit.  Without her memory, she is just real.  That was a good day.  And that day she loved having me.  I cherished the visit.

I spent Wednesday in the grocery shopping marathon, and Wednesday night at swim.

Thursday was for an extensive blood draw for Meghan and a triple dermatologist appointment.  Meghan headed to play practice, and I traveled to my vocal follow up in NYC.

My report was adequate, but not what I had hoped for.  Still swelling.  Still be very careful.  Still rest when you can.  Still exercise caution when you get back into your program on the 19th.

Friday was for vocal therapy.  And for trying to put the house back together.  And for painting upstairs, and washing the dist off the curtains, and visiting my in-laws.  It was our 17th Anniversary.  We sneaked an hour or two for dinner together…

Saturday was voice lessons, and…

Somehow it bled into Sunday, and Easter and some time with family.  But, it was immediately back to the painting.

By Monday I was waiting for the blood results, hoping to catch a call from one of the three doctors on the order.  We hit the orthodontist to have the retainer tightened, and a few things at Costco before it was time for swim…

I am focusing on the sunny days.  I am trying to find some time within the chaos to be still.

I asked Meghan why she was so uptight the other day.  It really was a stupid question.  This was the grossly abbreviated version of ONE aspect of her real life.

And tomorrow she will have to practice smiling and responding to the question “How was your break?”  in the only socially acceptable way.  “It was fine, how about you?”

Fine… it has so many meanings.  We don’t want to bring people down all the time.  It gets hard to have a conversation sometimes though.  Felix and I realized in the years since we’re married, one of us has been in an operating room somewhere in the neighborhood of 34 times.  A lot of our days are spent recovering.  Physically, mentally and emotionally recovering.  Fighting financially against incorrect billing, and generally trying to breathe.

I’ve said it before and I’ll say it again, we would not trade our lives for anyone’s.  However, just like in anyone’s life, some days are better than others.

I’m anxious for a vacation not peppered with appointments and surgeries.

Until then, maybe I should teach Meghan to answer “How was your vacation?” with “It’s complicated…”

#beatingcowdens